Editor’s Note: The following letter was sent to Nipissing/Timiskaming MP Jay Aspin and was requested to appear as a Letter to the Editor.

Dear Mr. Aspin;

It was with great anticipation I waited to see the outcome of the private members Bill C-280 introduced by Liberal MP Kirsty Duncan. I thought finally our government is headed in the right direction to give the people suffering from MS a bit of hope. Needless to say when the vote was handed down it was very disappointing, but to read some of the media stories that followed, it is now totally disturbing and unacceptable. Apparently you and your colleagues listened to the health minister and took some of her misinformation as gospel and I believe if you took a bit of time and heard from some of your own constituents you would see another side to this issue.

As a father of a daughter living with MS, I’ve watched over the last 10 years an energetic young woman that worked 50 to 60 hours a week as an HR manager become a recipient of a disability pension, who never knows on any given morning if she will be able to get up on her own and be productive, see her young daughter off to school or if it will be one of those days she is confined to bed. Once we heard about the CCSVI procedure and the possibility it might relieve some of the symptoms she endures daily, we assumed the medical community would jump on this new discovery as a way to improve the day-to-day quality of life for the thousands of Canadians that currently suffer from MS. It has been acknowledged and accepted this is not a cure but an opportunity to get relief for some of the symptoms.

My daughter fortunately was in a financial position that she could afford to travel and have this procedure done outside of Canada and was quite willing after a lot of research to take advantage of what was offered (again outside of Canada). The $15,000 she spent has afforded her a better quality of life in the last two years and we have witnessed her increased energy and positive attitude. Travelling outside of your own country to an foreign place to undergo an unfamiliar procedure without the support of your loved ones, having to leave your young children in the care of others for two weeks, and not to mention the financial burden, are all added stress for MS suffers and this is just deplorable but apparently condoned by the Conservation government.

As a member of local government I intend to start a grassroots movement to have this bill re-introduced and ask for your support. This bill was asking for a patient registry – to track Canadians who have travelled to have this treatment done, it was also asking to ensure that treated patients are not denied follow-up care when they get home (my daughter herself was denied treatment by a vascular doctor post-treatment) and finally that phase III clinical trials be started with CCSVI specialists (vascular specialists not neurologists). This is not an issue that will easily disappear due to the fact so many are suffering needlessly – the price of treatment is coming down – in the top US clinic right now the price is quoted at $8,500 (compared to the $15,000 my daughter spent less than two years ago). The top US Clinic (Synergy in California) has actually negotiated a deal with West Jet for reduced airfare for Canadian patients flying to California to get treatment. We are only asking to make a vascular treatment that is conducted on a daily basis in Canadian hospitals available to a group of people who happen to have multiple sclerosis, if there is even a slim hope that it will help make their day-to-day life better.

I have available a list of names I have gathered just from my own area that support Bill C-280. Should a byelection be called in the near future all of these people could not support a MP that is not willing to get behind a movement to improve the future health and well-being of thousands of people.

Sincerely
Roger Glabb, Powassan

 ww.cottagecountrynow.ca/opinion/article/1318027--disappointed-by-mp-s-uneducated-vote-on-ms-research